Comprehensive Summaries of Uppsala Dissertationsfrom the Faculty of Medicine 998

_____________________________ _____________________________

Oral Health and Experience of Oral Care among Cancer Patients during Radio- or Chemotherapy

BY

KERSTIN ÖHRN

ACTA UNIVERSITATIS UPSALIENSISUPPSALA 2001

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Dissertation for the Degree of Doctor of Philosophy (Faculty of Medicine) in Caring Sciencespresented at Uppsala University in 2001

ABSTRACT

Öhrn, K. 2001. Oral Health and Experience of Oral Care among Cancer Patients during Radio- orChemotherapy. Acta Universitatis Upsaliensis. Comprehensive Summaries of UppsalaDissertations from the Faculty of Medicine 998. 60 pp. Uppsala. ISBN 91-554-4940-9

Oral complications and symptoms are common among patients with cancer. The aim of this thesisis to study several aspects of oral status, oral health and its relation to quality of life, and oral careamong patients treated with radiotherapy or chemotherapy. Descriptive, comparative andcorrelational designs were used.

A series of consecutive patients admitted to a university hospital or a regional hospital toreceive radiotherapy for head and neck cancer or chemotherapy for haematological malignancies,were studied prospectively with regard to oral symptoms and their relation to health-related qualityof life using interviews and questionnaires, examination of the oral cavity and saliva tests. Allnurses and enrolled nurses who worked with these patients or with patients with lung cancer wereinterviewed about their education and knowledge in oral care and performed oral care. The medicaland nursing records on patients with these cancer diseases at the two hospitals were reviewed.

The results indicate that patients receiving radiotherapy experienced increasing oralsymptoms, which remained to a large extent one month after treatment. Patients receivingchemotherapy did not experience oral symptoms to the same extent. The oral symptoms weresignificantly related to patients’ health-related quality of life, particularly among those receivingradiotherapy. Data also indicate that there is a lack of adequate education and continuing educationin oral care among nursing staff. All patients were not examined orally before or during treatment,nor did they receive sufficient information or instruction related to oral hygiene. Patient compliancewith oral hygiene procedures was acceptable, although some patients reported difficulties. Oralstatus and oral care were insufficiently documented, particularly in nursing records. The attitudes tooral examination and discussion on oral hygiene differed between nursing staff and patients.Nursing staff objected to examining the oral cavity referring to patient integrity. This was notconsidered as a hindrance among patients. In conclusion, oral health is related to health-relatedquality of life, which motivates a multi-disciplinary approach to oral care.

Key words: Oral health, oral status, health-related quality of life, oral care.

Kerstin Öhrn, Department of Public Health and Caring Sciences, Section of caring Sciences,Uppsala University, SE-751 83 Uppsala, Sweden

© Kerstin Öhrn 2001

ISSN 0282-7476ISBN 91-554-4949-9

Printed in Sweden by Uppsala University, Tryck & Medier, Uppsala 2001

3

To

Staffan and Leonard

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ORIGINAL PUBLICATIONS

This thesis is based on the following papers, which will be referred to in the text by their Roman

numerals:

I Öhrn, K., Wahlin, Y-B., Sjödén, P-O. (2001) Oral status during radiotherapy and

chemotherapy: A descriptive study of patients experiences and the occurrence of oral

complications. Support Care Cancer, in press.

II Öhrn, K., Sjödén, P-O., Wahlin, Y-B., Elf M. (2001) Oral health and quality of life

among patients with head and neck cancer or haematological malignancies.

Submitted for publication.

III Öhrn, K., Wahlin, Y-B., Sjödén, P-O. (2000) Oral care in cancer nursing. European

Journal of Cancer Care, 9, 22-29

IV Öhrn K., Sjödén P-O. (2001) Patient experiences of oral care in haematological

malignancies or head and neck cancer. Submitted for publication.

V Öhrn, K., Wahlin, Y-B., Sjödén, P-O., Wahlin, A. (1996) Indications for and referrals

to oral care for cancer patients in a county hospital. Acta Oncologica, 35, 743-748.

Reprints were made with the permission from the publisher

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TABLE OF CONTENTS

INTRODUCTION 7

The diseases and their treatment 7

Oral health, oral symptoms and oral complications 9

Health-related quality of life 12

Nursing staff education, knowledge and attitudes to oral care 13

Oral care 14

Oral self-care 15

Documentation of oral status and oral care 16

The rationale for the study 16

AIMS 17

MATERIAL AND METHODS 18

Design 18

Subjects 18

Instruments 20

Procedure 22

Analyses and statistical procedures 23

Ethical considerations 24

RESULTS 25

Patient experiences of oral symptoms and the occurrences of oral complications 25

Oral symptoms and health-related quality of life 29

Education and knowledge among nursing staff 32

Attitudes to oral care 33

Oral care 34

Oral self-care 36

Documentation of oral status and oral care 36

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DISCUSSION 37

General aspects 37

Oral health, oral symptoms and oral complications 37

Oral health and health-related quality of life 39

Education, knowledge and attitudes to oral care 41

Oral care and self-care 42

Documentation of oral status and oral care 43

Methodological considerations 43

Implications for future research 45

CONCLUSIONS 46

ACKNOWLEDGEMENTS 47

REFERENCES 49

PAPERS I - V

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INTRODUCTION

The oral cavity is of central importance to most people. Verbal as well as non-verbal

communication is performed through the oral cavity. Nutritional intake, essential for survival,

depends on a well-functioning oral cavity. The anatomy of the oral cavity also contributes to a

person’s appearance.

Within health care, there is a long tradition of separating the oral cavity from the rest of the

body. In Sweden there are separate organisations and laws directing health care and dental care.

The insurance systems are different, and in addition, the educational system is divided in terms of

medicine/nursing and dentistry/dental hygiene. This is unfortunate, since many common diseases

and medical treatments involve the oral cavity and give rise to oral symptoms, and some oral

diseases compromise general health (Mendieta and Reeve, 1993, Scully and Cawson, 1987).

Multidisciplinary approaches and an extended teamwork are of vital importance to provide the best

care possible including the oral cavity.

It is of interest to investigate how patients with diseases and/or treatments that comprise the

oral cavity experience oral care and to investigate patient experiences of oral symptoms in relation

to their quality of life. This thesis concerns oral health and experiences of care among patients with

cancer, treated with radio- or chemotherapy.

The diseases and their treatment

Head and neck cancer

The term head and neck cancer comprises mainly squamous cell carcinoma and adenocarcinoma. It

includes cancer of the lips, oral cavity, pharynx, larynx, nasal and paranasal sinuses, neck, ear and

salivary glands. Approximately 1,000 new cases are diagnosed yearly in Sweden, and the

prevalence increases with age. Nearly one third of the cases are women and two thirds are men

(Cancer Incidence in Sweden, 2000). The five-year survival rates vary between 50% and 90%, and

have remained almost unchanged for decades. Survival rates vary mainly with the site of the

tumour, the pathological classification and the stage of the disease (Cancer i Siffror, 1998). The

tumours are usually treated with surgery and/or radiotherapy and in some cases also

chemotherapy.

Haematological malignancies

Haematological malignancies include several types of diseases such as lymphoma, leukemia and

myeloma. The leukemias are a heterogeneous group of neoplasms arising from malignant

transformation of hematopoetic cells. Approximately 3,200 new cases were diagnosed in Sweden

in 1998, with an increasing trend for lymphomas. More men than women are affected (Cancer

8

Incidence in Sweden, 2000). The five-year survival rate varies between 10% and 50% and has

improved over the last two decades especially for lymphoma (Cancer i Siffror, 1998). The

treatment includes chemotherapy, radiotherapy and bone marrow transplantation.

Small cell lung cancer

Lung cancer is classified into non-small-cell lung cancer and small-cell lung cancer. Approximately

3,000 new cases were diagnosed in Sweden in 1998. Approximately one-third of the cases are

women and two-thirds men with an increasing trend among women (Cancer Incidence in Sweden,

2000). The five-year survival rate is approximately 10% (Cancer i Siffror, 1998). The treatment for

small-cell lung cancer consists mainly of chemotherapy.

Radiotherapy

Radiotherapy of malignancies of the head and neck region often includes the major and minor

salivary glands depending on the location of the tumour. The total dose of radiotherapy varies

between 50 and 75 Gy delivered with fractionated irradiation in doses of 2 Gy per day or 1.2 Gy

twice daily during 5 days/week. Treatments are usually delivered on an outpatient basis.

Chemotherapy

Chemotherapy is usually given in cycles every third to fourth week with varying intensity

depending on the disease. It has become more and more common to treat patients on an outpatient

basis. This is true particularly for patients with lymphoma, myeloma and lung cancer. Patients who

receive more intensive chemotherapy may spend some time in hospital due to their medical

condition. When patients have leukopenia, they are usually isolated in hospital.

Oral effects of radio- and chemotherapy

Both radiotherapy and chemotherapy constitute a challenge to the patient’s oral status. Almost

100% of patients receiving radiotherapy for head and neck cancer develop some oral complication

while the corresponding figure for patients receiving chemotherapy is approximately 40% (Lunn,

1998, Sonis et al., 1999, Spijkervet et al., 1989). The patient’s defence mechanisms may be

impaired by cancer treatment or by the disease itself. Both therapies impair cell division and disrupt

normal replacement of oral mucosa resulting in mucositis (Jansma, 1991, Schubert et al., 1999,

Sonis, 1998). In addition, radiotherapy involving the salivary glands causes xerostomia, which may

lead to taste loss and an elevated level of cariogenic bacteria. This may result in dental caries and

make patients more liable to infections. Oral musculature and alveolar bone are other tissues that

may be damaged by radiotherapy causing trismus and osteoradionecrosis (Heimdahl, 1999,

Jansma, 1991). Chemotherapy may cause myelosuppression, immunosuppression, mucosal

9

lesions, haemorrage and taste alterations. The disruption of the oral mucosa in a myelosuppressed

patient may lead to systemic infection (Heimdahl, 1999, Peterson, 1992, Schubert et al., 1999). The

present study involves a comparison of the frequency of oral symptoms, complications and oral

care between patients receiving radiotherapy and those receiving chemotherapy.

Oral health, oral symptoms and oral complications

Oral health includes patients’ experiences of and attitudes to oral status. In the present study, the

term oral symptoms refers to patient experiences, whereas “oral complications” is used to denote

phenomena assessed by staff. Different populations, diagnoses, medical treatments, assessment

methods and assessment times have been suggested to explain the variation in reports of oral

symptoms and complications (Dodd et al., 1996)

Symptoms and complications related to saliva

Saliva has a great number of digestive and protective functions and is important for the ability to

talk. Saliva lubricates the oral cavity and provides�buffers, minerals and proteins that serve as a

�protection from�infections (Ekström, 2000, Tenovuo and Lagerlöf, 1994). When the salivary glands

are located within the field of radiation, salivary production may be totally or partly reduced

(Franzén et al., 1992, Leslie and Dische, 1994)

Studies have demonstrated that 81% to 100% of patients receiving radiotherapy directed

towards the oral cavity including the salivary glands, experienced mouth dryness (Bjordal et al.,

1995, Bundgaard et al., 1993, Franzén et al., 1992, Karlsson, 1987, Kuten et al., 1986, Langius et

al., 1993, Niedermeier et al., 1998). Many patients find mouth dryness to be a significant cause of

distress (Holmes, 1998), which may affect eating and increase the risk of inadequate nutrition

(Backstrom et al., 1995). Speech difficulties were reported by 51% six�months after radiotherapy

according to Epstein et al (Epstein and Chow, 1999). Xerostomia has also been reported among 79

% of patients receiving bone marrow transplants after total body irradiation (Bågesund et al., 2000,

Chaushu et al., 1995), and 44% of patients with advanced cancer mentioned dry mouth as a

symptom to their physician (Oneschuk et al., 2000)

Studies among patients�receiving radiotherapy report that saliva may change and become

more viscous and sticky (Bernhoft and Skaug, 1985, King et al., 1985, Kuten et al., 1986).

Viscosity increases with a reduction of the secretion rate (Bernhoft and Skaug, 1985)

In several studies, reductions have been reported in stimulated (Eisbruch et al., 1999, Epstein

et al., 1998, Franzén et al., 1992, Niedermeier et al., 1998) as well as unstimulated (Eisbruch et al.,

1999, Epstein et al., 1998, Kuten et al., 1986) salivary secretion rates among patients receiving

radiotherapy. The salivary secretion rate seems to decrease rapidly after approximately one week at

a dose of 10 Gy (Epstein et al., 1998, Franzén et al., 1992, Niedermeier et al., 1998).

10

For patients receiving chemotherapy, the literature reports divergent results. Wahlin (Wahlin, 1991)

demonstrated a temporary reduction of the stimulated secretion rate among patients with leukemia

1 - 3 days after the start of chemotherapy. No change in stimulated secretion rate was reported

among patients with lymphoma (Laine et al., 1992, Meurman et al., 1997)

There is a lack of knowledge about the extent to which patients receiving chemotherapy for

haematological malignancies experience mouth dryness. Lip dryness can be a significant problem

for patients receiving chemotherapy but no incidence figures have been reported.

Symptoms and complications related to the oral mucosa

The oral mucosa consists of epithelium and connective tissue and is the first line of defence

(Heimdahl, 1999, Sonis, 1998). Proliferating malignant cells are most susceptible to the effects of

irradiation and chemotherapy. However, normal cells are also susceptible to those effects, which are

most pronounced in tissues with a rapid turn-over of cells, for example oral and gastro-intestinal

epithelia and bone marrow. Chemotherapy may thus cause mucositis both through a direct effect

on the epithelia and through bone marrow effects causing leukopenia. This may result in a

propensity for infections in a complex interaction with the oral microflora (Sonis, 1998). The oral

cavity contains micro-organisms that are normally harmless, but which under certain circumstances

may cause infections of viral, fungal or bacterial origin (Heimdahl, 1999, Schubert et al., 1999).

Pain is a pronounced symptom of mucositis and candidiasis. Among patients receiving

radiotherapy, pain was reported by 58% six months after treatment (Epstein et al., 1999). In

addition, oral pain has been reported in studies of quality of life but no frequency figures were

presented (Bjordal et al., 1995, Hammerlid et al., 1997a). Several studies demonstrate that pain is a

frequent side effect with an incidence of 67% to 86% among patients receiving chemotherapy

(McGuire et al., 1993, McGuire et al., 1998, Persson et al., 1995). Pain may complicate swallowing,

resulting in an inadequate nutritional intake.

The frequency and severity of mucositis is associated with many factors such as type, dose

and frequency of drug administration and the total dose of radiotherapy. Diagnoses, patient age

and oral health status also influence the occurrence of mucositis (Andersson et al., 1999, Bernhoft

and Skaug, 1985, Bundgaard et al., 1993, Epstein and Gangbar, 1987, Kuten et al., 1986, Lockhart

and Clark, 1990, Posner et al., 1985, Sonis, 1998, Sonis et al., 1999, Spijkervet et al., 1989, Wahlin

and Matsson, 1988, Wilkes, 1998). Mucositis affects between 54% and 100% of patients receving

radiotherapy (Bundgaard et al., 1993, Kuten et al., 1986, Posner et al., 1985, Sonis et al., 1999,

Spijkervet et al., 1989). For patients receiving chemotherapy, the occurrence of mucositis varies

between 56% and 82% (Epstein and Gangbar, 1987, Sonis et al., 1999, Wahlin and Matsson,

1988). Mucositis may impair communication, oral intake and sleep (Wilkes, 1998)

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There is a large number of methods to assess mucositis. The variability of methods used for

mucositis assessment is a barrier to comparisons of incidence as well as studies of interventions

for prevention or treatment of mucositis (Parulekar et al., 1998, Schubert et al., 1992). Newly

developed instruments have been presented in recently (McGuire et al., 1999, Schubert et al., 1992,

Sonis et al., 1999). Hopefully, these will facilitate future research.

Candida infection is the most common oral fungal infection in myelosuppressed patients

during and after radiotherapy (Heimdahl, 1999, Jansma, 1991, Lunn, 1998, Schubert et al., 1999).

Reports show that 57% to 89% of patients with cancer have positive cultures for candida species

(Wilkes, 1998). A dry mouth predisposes patients to develop oral candidiasis (Lunn, 1998). In

addition, patients may be affected by viruses and bacteria causing systemic infections (Heimdahl,

1999, Schubert et al., 1999). The incidence of herpes simplex virus infections varied from 65% to

90% in seropositive patients receiving intensive chemotherapy and bone marrow transplants

(Wilkes, 1998). Oral hemorrhage may occur during treatment-induced thrombocytopenia with a

frequency of 15 % (Dreizen, 1990).

Symptoms and complications related to nutrition

An adequate nutritional intake is important for patients treated with chemo- or radiotherapy.

However, cancer is often accompanied by weight loss (Hammerlid et al., 1998, Posner et al., 1985,

Skolin et al., 1997). Taste alterations and loss of appetite are common side effects of both chemo-

and radiotherapy (Bernhoft and Skaug, 1985, Bundgaard et al., 1993, King et al., 1985, Kuten et al.,

1986, Langius et al., 1993, Lockhart and Clark, 1990, Persson et al., 1995, Skolin et al., 1997),

which may be one reason for weight loss and a poor nutritional intake. Dysphagia, another

common side effect, (Andersson et al., 1999, Bundgaard et al., 1993, King et al., 1985, Kuten et al.,

1986, Lockhart and Clark, 1990) and trismus (Jansma, 1991) may also interfere with an adequate

nutritional intake. Many patients complain about eating difficulties when assessed for quality of

life but no exact frequency figures have been presented (Bjordal et al., 1995, Langius et al., 1993,

Persson et al., 1995).

In summary, among patients receiving radiotherapy, major symptoms and complications related to

saliva have been described in the literature. However, there is a lack of knowledge on mouth

dryness, lip dryness and salivary viscosity among patients receiving chemotherapy. Mucositis has

been extensively investigated in the dental literature but is seldom connected to the experience of

pain among patients receiving radiotherapy. There is a scarcity of prospective studies with repeated

assessment of symptoms experienced by patients and their relation to complications assessed by

professional staff.

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Health-related quality of life (HRQOL)

Quality of life is a concept used in many disciplines to incorporate a variety of aspects of an

individual´s life. HRQOL is a multidimensional concept dealing with quality of life related

specifically to health and disease. There is no single unequivocal definition of HRQOL (Gotay and

Moore, 1992), but there is an increasing consensus that HRQOL refers to the physical,

psychosocial and social functioning of patients and the impact of disease and treatment on their

abilities and daily functioning (Forsberg, 1996). Assessment of quality of life may help to identify

patients with severe physical and/or psychosocial problems (Bush et al., 1995, Hammerlid et al.,

1999, Osoba et al., 1998, Zittoun et al., 1999).

Dental research and clinical practice have traditionally concentrated mostly on dental and

medical diagnoses assessed by professionals, largely disregarding patient experiences. Today,

research on quality of life in an oral/dental perspective is growing and there is an interest in

introducing the concept oral health-related quality of life. This has been studied mostly among the

elderly (Locker and Slade, 1994, MacEntee et al., 1997, Slade et al., 1996). It has been

operationalised by a variety of variables assessed by dental professionals such as dental caries,

periodontal disease or oral soft tissue conditions. This indicates that oral health is often

conceptualised in terms of the absence of disease.

According to Gift et al (Gift et al., 1997), it is difficult to find unique factors identifying oral

health, which implies that oral health is a part of general health. Gift and Atchinson (Gift and

Atchison, 1995) emphasise three approaches to oral health-related quality of life: The oral cavity in

itself; the impact of the oral cavity on the rest of the body and vice versa. These approaches indicate

the oral cavity as an integral part of the body, which may have an impact on general health. Also,

general health may have an impact on the oral cavity. In an interview study on the significance of

the mouth in old age, MacEntee et al (MacEntee et al., 1997) found that oral health was an

interconnected mix of three dominant themes: comfort (including pain and eating), oral hygiene

(the significance of a clean mouth from a personal and a social perspective) and general health

(“your mouth and your body flow together”). Patients considered oral health to be a part of

general health. Both Gift et al and MacEntee et al demonstrate relationships between the oral cavity

and the rest of the body, which necessitate considerations of the oral cavity when diagnosing and

treating patients. This is particularly important for patients with serious diseases demanding

comprehensive medical treatment that has an influence on the oral cavity.

Several studies have been performed on HRQOL among patients receiving radiotherapy for

head and neck cancer (Allison et al., 1999, Bjordal et al., 1995, Bjordal et al., 1994b, Bjordal et al.,

1999, Epstein et al., 1999, Gotay and Moore, 1992, Hammerlid et al., 1997b, Hammerlid et al.,

1997a, Langius, 1995, Rathmell et al., 1991, Sherman et al., 2000). The findings show that oral

symptoms have an influence on patients’ everyday life and that such symptoms may influence

13

quality of life negatively. In studies of HRQOL among patients with haematological malignancies,

oral symptoms have been reported to be very distressing (Bush et al., 1995, Persson et al., 1995,

Zittoun et al., 1999).

In conclusion, there is a growing interest in HRQOL in dentistry. Studies have been performed

using specific instruments for head and neck cancer patients. However, there is a lack of

knowledge about the influence of oral symptoms on HRQOL, particularly among patients

receiving chemotherapy. There is no previous study in which patients have been interviewed

regarding their experiences of oral symptoms and their relation to HRQOL.

Nursing staff education, knowledge and attitudes to oral care

Oral health care is a daily routine of hygiene for most people. Patients suffering from a disease,

undergoing treatment that affects the oral cavity may need specific oral hygiene routines or even

assistance from dental or health care staff or relatives. Research on knowledge and attitudes related

to oral issues among nurses has often been performed among staff in care of the elderly (Boyle,

1992, Nordenram, 1997, Paulsson et al., 1998, Wårdh et al., 2000). Nieweg et al (Nieweg et al.,

1992) and Sweeney et al (Sweeney et al., 1998) found that the education of the nursing staff in

charge of patients with cancer was insufficient. In a recent study by Paulsson et al (Paulsson et al.,

1998), it was found that the knowledge among nursing staff in care of the elderly increased after a

continuing education session. Even though the majority of nursing staff consider oral care to be an

important part of good nursing, it is still a neglected part and oral hygiene seems to be difficult to

provide (Boyle, 1992, Nordenram, 1997, Wårdh et al., 2000). However, attitudes and subjective

norms predicted 39 % of the behaviour to provide oral care among nurses (Wallace et al., 1997). In

a study by Larson et al (Larson et al., 1993), nurses and patients agreed that mucositis was one of

the most distressing symptoms, but stomatitis was rated very low in a study on research priorities

among oncology nurses (Whelan-Funkhouser and Moeller-Grant, 1989). Löfmark et al (Löfmark

et al., 1999) found that both nurses and nursing students underestimated patient experiences of a

dry mouth.

Little is known about education, knowledge and attitudes to oral care among nursing staff caring

for patients with cancer and if their attitudes are in accordance with patient attitudes.

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Oral care

Oral care should be both preventive and therapeutic to minimise the risk for oral complications and

symptoms and to prevent systemic complications. A multidisciplinary approach has been advocated

to provide proper oral care for these patients (Jontell and Koch, 1995).

Dental care

Today, there is consensus that patients receiving chemo- or radiotherapy should be examined by

dental staff and necessary dental/oral treatment should be administered before the start of the

medical treatment. In addition, appropriate prophylaxes should be introduced (Jansma, 1991,

Jontell and Koch, 1995, Heimdahl, 1999, Lunn, 1998, National Institute of Health Consensus

Development Conference, 1989). However, not all patients develop oral complications or

experience oral symptoms, why it is a delicate task to predict who is at risk. Intensive

chemotherapy and high doses of radiotherapy involve higher risk, as do specific agents (Peterson,

1999).

Oral examination

Regular examination of the oral cavity enables detection of early signs of oral complications.

Studies have shown that daily oral examination is rarely performed among nurses (Ezzone et al.,

1993, Ganley, 1996, Nieweg et al., 1992). It has been recommended however, that the oral cavity

should be examined and observations documented daily for early detection of oral manifestations.

Also, changes should be recorded as soon as they are observed. For monitoring of efficacy and

side effects, daily examinations should be conducted by professional staff (Beck, 1979, Heals,

1993, Holmes and Mountain, 1993, Yeager et al., 2000). However, there is a lack of knowledge

about how patients receiving radio- or chemotherapy experience oral examination.

Oral hygiene procedures

Graham et al (Graham et al., 1993) found that the contents of information given to patients were

inconsistently documented. According to Larson et al (Larson et al., 1998), patients are not taught

on a routine basis how to care for the mouth. Several types of advice have been published on the

management of oral hygiene (Barker, 1999, Holmes, 1998, Lunn, 1997, Lunn, 1998, Plevová, 1999,

Raber-Durlacher, 1999). However, there is a lack of scientific evidence of the effects of

recommended oral hygiene procedures (Plevová, 1999). Oral hygiene has been considered as a

basic measure (Plevová, 1999) and some studies have demonstrated a reduction of oral

complications after introduction of oral hygiene procedures including frequent tooth brushing

(Beck, 1979, Borowski et al., 1994, Ellegaard et al., 1989, Graham et al., 1993, Hickey et al.,

15

1982, Karthaus et al., 1999, Levy-Polack et al., 1998). Mechanical plaque control may reduce the

risk of mucositis progression (Bavier, 1990, Schubert et al., 1999). It has been recommended that

oral hygiene procedures should be performed at least 3 to 4 times/day and that an oral care plan

should accompany the patient’s general care plan (Beck and Yasko, 1993, Bonnaure-Mallet et al.,

1998, Peterson, 1992).

In addition to dental hygiene care, the oral mucosa and the lips need to be kept moistened

(Schubert et al., 1999). Among the available agents, none has been shown to be efficacious for

prevention or healing mucositis, even though several agents have been investigated. Dental

treatment and oral hygiene procedures still have an important role in the prevention and treatment

of mucositis (Kowanko et al., 1998, Peterson, 1999, Plevová, 1999, Schubert et al., 1999, Wilkes,

1998).

Treatment for the relief of mouth dryness also includes thorough oral hygiene, saliva

substitutes, and topical fluorides to prevent dental caries (Jansma, 1991, Peterson, 1992). Patients

suffering from pain may be recommended topical analgesic agents, severe pain may even require

continuous morphine treatment (Wilkes, 1998). A systematic approach based on written

instructions is necessary to achieve uniformity in oral care. There are no studies of patient attitudes

to oral hygiene instruction.

To sum up, a lot of research has been performed on the prevention and treatment of oral mucositis

and prevention of infections. However, very little is known about patient attitudes to examination

and information on oral hygiene and how often such actions are performed. There is also a lack of

knowledge about the referral pattern to dentistry for patients with cancer.

Oral self-care

Oral self-care is important for the prevention of oral diseases like dental caries and periodontal

disease. For patients treated with chemotherapy or radiotherapy, it is also important to prevent oral

mucositis, infections and to relieve mouth dryness. Most oral hygiene procedures are possible to

perform as self-care, and an adequate oral self-care program may facilitate compliance (Larson et

al., 1998). To comply with comprehensive procedures may be bothersome, especially when

suffering from a severe disease, and patients may need professional support (Kaplan et al., 1993).

Nurses are in charge of supportive facilitation of the patient’s knowledge and self-care activities

(Larson et al., 1998), and this needs to be performed in co-operation with dental hygienists.

There is lack knowledge of the extent of cancer patient compliance with oral hygiene procedures.

16

Documentation of oral status and oral care

A number of studies have demonstrated serious deficiencies in nursing documentation (see

Ehrenberg (2000) for a review (Ehrenberg, 2000). In addition, the oral cavity seems to be a

neglected area of nursing care and documentation on oral care is often lacking, suggesting a low

priority for oral care (Ehrenberg and Ehnfors, 2001, Oneschuk et al., 2000, Robins Sadler et al.,

2000). In a study of medical records Epstein and Gangbar reported that oral lesions were noted for

56% of the patients (Epstein and Gangbar, 1987). However, Sonis and Kunz (Sonis and Kunz,

1988) found notes on oral problems only among 13% of their patients.

Very little is known about the documentation of oral symptoms and oral care among oncology

nurses.

The rationale for the study

There is still a lack of knowledge concerning patient experiences of a variety of oral symptoms

developing over a period of intense treatment, and how these oral symptoms influence health-

related quality of life. In order to provide adequate oral care, it is necessary to have knowledge

about a healthy mouth, signs and symptoms of oral diseases and an attitude that oral health and

oral care is of importance. Little is known about how often patients are referred to dentistry before

the start of medical treatment and if oral care is provided and documented properly. In addition,

knowledge about patient attitudes to oral care and compliance with advice may facilitate the

implementation of adequate oral care procedures.

17

AIMS

The general aim of this thesis is to study several aspects of oral status, oral health and its relation to

quality of life, and oral care among patients treated with radiotherapy or chemotherapy.

The following research questions will be penetrated:

♦ What characterises patients’ experiences of their oral status during radiotherapy for head and

neck cancer or chemotherapy for haematological malignancies? To what extent do patient

experiences agree with the occurrence of oral complications as assessed by professional staff?

(Study I)

♦ Are there any relations between patient experiences of oral symptom and their perceived health-

related quality of life? (Study II)

♦ What education in oral care, self-rated knowledge about oral care and attitudes to oral care

characterise nursing staff in charge of patients with haematological malignancies, head and

neck cancer or small cell lung cancer? Are there any differences between nurses and enrolled

nurses? (Study III)

♦ What types of oral care are performed by nursing staff in charge of patients with

haematological malignancies, head and neck cancer or small cell lung cancer? Are there any

differences between nurses and enrolled nurses? (Study III)

♦ To what extent are patients with haematological malignancies, head and neck cancer or small

cell lung cancer referred to dentistry before the start of medical treatment? (Study V)

♦ What characterises patient experiences of information on oral complications, examination of

the oral cavity and oral hygiene information and instruction? (Study IV)

♦ What attitudes do patients have to oral examination and oral hygiene during cancer treatment.

Are there any differences in attitudes to oral care between nursing staff and patients? (Study III,

IV)

♦ To what extent do patients comply with instructions on oral care? (Study IV)

♦ To what extent is information about oral signs, symptoms and oral care noted in the medical

records of patients with haematological malignancies, head and neck cancer or small cell lung

cancer? (Study V)

18

MATERIAL AND METHOD

Design

Descriptive, comparative and correlational designs were used for the studies as displayed in Table

1. A prospective longitudinal design with repeated measures was used in Studies I and II. Studies

III and IV are cross-sectional and the chart review in Study V is retrospective (Table 1).

Table 1. Design and data collection methods used in Studies I - V.

Study Design Data collection method

I Prospective descriptive andcorrelational with repeated measures

Self-recording, physical examination andsaliva tests

II Prospective descriptive andcomparative with repeated measures

Self-recording, physical examination andsaliva tests

III Cross-sectional, descriptive andcomparative

Semi-structured interview with hospital staff

IV Cross-sectional, comparative Semi-structured interview with patients

V Retrospective, descriptive Chart review

Subjects

From August 1998 until August 1999, a convenience sample of 52 consecutive patients was

eligible for the prospective study including repeated measures. The final sample consisted of 41

patients (79%), admitted to a university (n = 26) or a regional hospital (n = 15) to receive

radiotherapy for head and neck cancer (n = 18) or chemotherapy for haematological malignancies

(n = 23), (Studies I, II, IV).

Among the 18 patients with head and neck cancer, a total of 11 patients received radiotherapy

in 2 Gy fractions / day, with a total dose of 50 Gy (n = 2), 66 Gy (n = 5) or ≥ 70 Gy (n = 4).

Seven patients received radiotherapy in 1.2 Gy sections twice daily. This was done 5 days a week

for 5 – 7 weeks depending on the amount of radiation to be given. Seven patients also received

chemotherapy of moderate intensity.

Among patients with haematological malignancies, 14 patients received chemotherapy of

moderate intensity: intravenous treatment in doses usually inducing mild or moderate bone marrow

19

suppression, and 9 received therapy of intensive intensity: intravenous treatment in doses regularly

inducing severe bone marrow suppression.

All nurses (n = 98) and enrolled nurses/nursing assistants (referred to in Study III as

enrolled nurses) (n = 51), who worked with patients with haematological malignancies, head and

neck cancer or small cell lung cancer at a university hospital and a regional hospital, were

approached for interviews during the spring of 1997, and 92% (nurses n = 90, enrolled nurses n =

47) participated (Study III).

In Study V, all records on patients with haematological malignancies, head and neck cancer

and small cell lung cancer (n = 202) at a university hospital and a regional hospital in the years

1990 – 1992 were eligible for a chart review. A total of 188 records (93%) were reviewed.

Number of subjects and characteristics regarding gender, age and diagnosis are presented in Table

2. Further details on subjects and non-participants are presented in the methods section of each of

the studies.

Table 2. Subject characteristics

Studies I, II, IV

(patients)

Study III

(staff)

Study V

(patients)

Number of eligible subjects 52 149 202

Number of participants (%) 41 (79) 137 (92) 188 (93)

Gender

Female (%)

Nurses/enrolled nurses

16 (39) 130 (95)

86/44

73 (39)

Male (%)

Nurses/enrolled nurses

25 (61) 7 (5)

4/3

115 (61)

Age mean years, SD (range) 54.1 ± 14.0

(18 – 73)

38.6 ± 9

(24 – 61)

66.6 ± 13.8

(24 – 96)

Diagnosis

Haematological malignancies (%) 23 (56) - 118 (63)

Head and neck cancer (%) 18 (44) - 46 (24)

Small cell lung cancer (%) - - 24 (13)

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Instruments

Experiences of oral symptom

Experiences of oral symptoms were rated on 100-mm visual analogue scales with end-points “no

oral discomfort” – “worst imaginable oral discomfort”. The questions concerned the following

ten conditions of the oral cavity: pain, mouth dryness, salivary viscosity, ability to talk, ability to

perform oral hygiene, dysphagia, taste alterations, the condition of lips and gingiva, and the feeling

of a clean mouth. The form was a revised version of that presented by Kosac et al (Kosac et al.,

1996) (Studies I, II, IV). All oral symptoms were summarised at each assessment to an Oral

Symtom Summary Score (OSSS) to facilitate comparisons (Study II). The OSSS peak score was

defined as the highest score for each patient during the assessment time (Study IV). Higher scores

indicate more intense symptoms.

Mucositis

Mucositis was assessed by the Oral Mucositis Index (OMI) (Schubert et al., 1992). The OMI

assesses atrophy, erythema, edema and pseudomembrane/ulceration in eleven regions of the oral

cavity, each rated from 0 (normal) to 3 (very severe). The total score range is 0 – 102 (Studies I, II,

IV).

Salivary secretion rate

Salivary secretion was assessed by collection of resting whole saliva as well as stimulated saliva.

Resting whole saliva was collected by having the patient drivel in a graduated glass during 5 min.

Saliva was stimulated by chewing on 1 g of paraffin and collected in a graduated glass during 5

min. The secretion rate was determined as ml per min. Normal flow rate of resting whole saliva is ≥

0.3 ml/min and normal flow rate of stimulated saliva is ≥ 1 ml/min. A resting flow rate of < 0.1

ml/min and a stimulated flow of < 0.7 ml/min are generally indicative of hyposalivation (Tenovuo

and Lagerlöf, 1994) (Study I).

Dental caries

Dental caries observation was performed at baseline and expressed as decayed and filled

permanent surfaces (DFS). For patients who had visited hospital dentistry, supplementary details

were gathered from the dental records (Studies I, II, IV).

Gingival condition

Gingival condition was assessed visually on the buccal surfaces of the teeth included in the

Community Periodontal Index (CPI) (WHO, 1997), using a four-point scale (normal, mild,

moderate, severe) at baseline and at the end of the study (Study I).

21

Oral hygiene

Oral hygiene was assessed visually and rated as a global score ranging from excellent, rather good

to poor or very poor. Penlight and mirror was used at all assessments (Study I).

Body Weight

Body weight was measured on a digital balance at baseline and at the end of the study (Study I).

Interview with patients

A semi-structured format was employed for the patient interviews. These were based on an

interview guide consisting of a 41-item questionnaire including open-ended questions covering the

following areas of patient experiences: oral hygiene habits, and dental visits before diagnosis and

during cancer treatment, information on oral complications and oral hygiene and instructions in

oral hygiene, experiences of oral complications and oral hygiene procedures, frequency of oral

examination performed by hospital staff, patient attitudes to oral examination, and questions on oral

hygiene and ability to eat and drink during cancer treatment. This assessment also included patient

judgements of the influence of oral status on health-related quality of life, assessed by two

questions: To what extent have the oral symptoms had an impact on your quality of life? Have the

oral symptoms been a hindrance in your everyday life? (Studies II, IV).

Health-related quality of life, HRQOL

HRQOL was assessed by the European Organization for Research and Treatment of Cancer

Quality of Life questionnaire (EORTC QLQ-C30) (Aaronson et al., 1993). This is a 30-item

instrument composed of multi-item scales and single items that are supposed to reflect health-

related quality of life. It includes five functional scales [physical (PF), role (RF), cognitive (CF),

emotional (EF) and social (SF)], three symptom scales (fatigue, pain, nausea and vomiting), and a

global health and quality of life scale (QL). Remaining single items assess symptoms that are

frequently reported by cancer patients, such as dyspnoea, loss of appetite, sleep disturbances,

constipation and diarrhea, and an item on the financial impact of disease and treatment. Responses

to all scales and single items are given on four- or seven-point Likert scales. The time window is

"the previous week” (Study II).

The EORTC QLQ-H&N35 was employed to tap aspects of quality of life specific to head

and neck cancer (Bjordal et al., 1994a, Bjordal et al., 1999, Sprangers et al., 1993). This is a 35-

item module composed of seven multi-item scales (pain, swallowing, senses, speech, social eating,

social contact and sexuality) and eleven single items. With the exception of five items (use of pain

killers, nutritional supplements, feeding tube, weight loss and weight gain), all scales and items have

22

four-point Likert scales. Remaining single items have a dichotomous response format (yes /no).

The time window is “the previous week" (Study II).

Interview with nurses and enrolled nurses

A semi-structured interview format was employed based on a 43-item questionnaire including

open-ended questions covering the following areas: basic and continuing education in oral care,

information on and estimated frequency of oral complications, examination of the oral cavity,

documentation on oral care, oral care routines, attitudes to oral care, co-operation with dentistry, and

demographic data. Self-rated knowledge in specific areas of oral care was rated on 100 mm visual

analogue scales with end-points “non existent – excellent”. Higher scores indicate better

knowledge (Study III).

Oral self-care

Daily self-recording of oral hygiene self-care procedures was performed on a form with columns

for various kinds of oral hygiene products and one column for dates, to be completed each time a

product was used during the day. The form was a revised version of that presented by Kosac et al

(Kosac et al., 1996) (Study IV).

Chart review

A chart review protocol was developed for this study with a form including information about

diagnosis, length of stay in hospital, type of antineoplastic treatment, drugs, notes made by

physicians and nurses on oral signs and symptoms and oral care performed at the ward, referral to

dentistry and demographic data (Study V).

Procedure

Patients in Studies I, II and IV were given written and verbal information at the invitation to

participate. All participants gave their written consent. Baseline was defined as the assessments

before the start of radiotherapy or the second/third chemotherapy cycle, respectively. At that time,

interview questions were asked regarding oral hygiene and dental visits before diagnosis, and the

oral cavity was examined with regard to gingival condition, dental caries, oral hygiene and

mucositis. Stimulated and resting whole saliva was collected and body weight was measured.

Patients completed the VAS questionnaire concerned with their experience of oral conditions and

filled in the HRQOL instrument. The form for daily self-recording of oral hygiene procedures was

handed out. The same observer performed the baseline assessment and the final assessment

throughout.

23

Patients were examined regularly by one of two observers at the clinic or in their homes at every

ten Gy increase of radiotherapy (head and neck), or once a week during the chemotherapy cycle

(haematological malignancies). Mucositis and oral hygiene were assessed, resting whole saliva was

collected and patients completed the VAS questions. The self-recording form on oral hygiene was

collected and a new one was handed out. At 30 Gy (head and neck) or after two weeks

(haematological malignancies), patients also completed the EORTC QLQ-C30 and the EORTC

QLQ-H&N35 questionnaires (head and neck).

After completion of radiotherapy or the chemotherapy cycle, assessments identical to those at

baseline were repeated. In addition, there was a final interview as described earlier. Data on

diagnosis, dental and medical treatment and leukopenia were retrieved from the dental and medical

records.

In addition, patients given radiotherapy were interviewed one month post treatment when they

also completed the VAS questions concerned with experiences of oral status. Patients receiving

radiotherapy were interviewed by telephone one month after treatment using mainly the same

questions as at the end of treatment. At that time, they also completed the EORTC QLQ-C30, the

EORTC QLQ-H&N35 and the VAS questionnaire, which had been mailed to patients.

Nursing staff was given written information when invited to participate in Study III. For

those who agreed to participate, the head nurse arranged a time for a personal interview. The

interviews took place at work and lasted for 20 - 30 minutes. The interviewer wrote down the

respondents’ replies.

One observer reviewed all charts in Study V. The records were examined from the time of

cancer diagnosis and for at least one year.

Analysis and statistical procedures

Data from the chart review and interviews were categorised according to content similarities and

differences. In the analysis of the patient interviews, notes were carefully read to determine

categories. Statements were then categorised by the first author. A second assessor was provided

with all statements and sorted these, using the same categories. Responses regarding the impact of

oral symptoms on quality of life were categorised into great, some and no influence. The response

category “irrelevant” was used for patients reporting no oral symptoms in the interview. Replies to

the question on oral symptoms as a hindrance were categorised into yes, no and irrelevant.

Linear 0-100 transformations were performed on each item of the EORTC QLQ-C30 and the

EORTC QLQ-H&N35. Higher scores on the functional QLQ-C30 scales, and on the global health

status quality of life scale indicate a higher quality of life, whereas higher scores on symptom

scales, the multi-item QLQ-H&N35 scales and single items indicate more intensive symptoms.

24

Data were presented as descriptive statistics by means of cross-tabulation and frequency tables. A

p-value ≤ .05 was considered statistically significant if not stated otherwise. The statistical methods

used for analysis are presented in Table 3. Detailed descriptions are presented in the methods

section of each of the studies.

Table 3. Statistical methods

Study Statistical method

I Repeated measures analyses of variance (ANOVA) using Fisher´s PLSD test for posthoc comparisons. Friedman analysis of variance by ranks, Mann-Whitney U-test,paired t-test, Wilcoxon signed rank test, Spearman rank correlations

II Repeated measures analyses of variance (ANOVA) using Fisher´s PLSD test for posthoc comparisons. Friedman analysis of variance by ranks. t-test, Pearson correlationcoefficient. For correlations computed for each single oral symptom, a p-value of <0.01 was regarded as statistically significant

III χ2 test, unpaired t-test or two-way analysis of variance. The Fischer PLSD-test wasused for post hoc testing

IV χ2 test, t-test

V Pearson´s product-moment correlation, two-tailed t-test (unpaired), Mann-Whitney Utest, ANOVA and χ2 test

Ethical considerations

All data were treated confidentially. Permission for each study was obtained from the medical

directors at each department and all studies were approved by the Research Ethics Committee of

the Faculty of Medicine at Uppsala University

25

RESULTS

Patient experiences of oral symptoms and the occurrence of oral complications

Study IV demonstrated that 85%, including all patients receiving radiotherapy (n = 18) and 17

patients receiving chemotherapy (out of n = 23), reported that they had experienced oral symptoms.

Among those, 42% (n = 17) stated that they had received some help with their oral symptoms.

Patients receiving radiotherapy reported significantly more oral symptoms (OSSS peak value 555

± 246) and higher mucositis scores (OMI peak value 29.4 ± 11.8) than patients receiving

chemotherapy (OSSS 142 ± 105) (OMI 6.8 ± 8.7) (t = 7.2, 7.1; df 39; p < .001).

Patients receiving radiotherapy for head and neck cancer

In Study I, patients with head and neck cancer experienced a significant increase in oral symptoms

at the end of treatment compared to the start of radiotherapy. One month post treatment, several

oral symptoms were still elevated compared to baseline (Fig. 1, 2).

Fig. 1. Reports of oral symptoms related to saliva among patients receiving radiotherapy forhead and neck cancer (symptom ratings using visual analogue scale).

base

line

10 G

y

20 G

y

30 G

y

40 G

y

50 G

y

60 G

y

end

of tr

eatm

ent

1 m

onth

afte

r tr

eatm

ent

0

10

20

30

40

50

60

70

80

90

100

pain

gingival condition

ability to perform oral hygiene

dysphagia

feeling of a clean mouth

assessment

sym

ptom

rat

ings

26

Fig. 2. Reports of oral symptoms related to oral mucosa among patients receiving radiotherapyfor head and neck cancer (symptom ratings using visual analogue scale).

The oral mucositis scores showed a significant increase over time (2.2 ± 2.5 at baseline, 28.8 ±

13.5 at the end of treatment) (F = 24.5; df 7/84; p < .001). All patients had at least one sign of

mucositis. Oral ulcers occurred in 17% of patients at baseline and this figure increased to 100% at

the end of treatment. The resting whole salivary secretion rate decreased significantly after 10 Gy,

followed by a slow recovery (.47 ± .41 at baseline, .27 ± .28 after 10 Gy, .40 ± .51 at the end of

treatment) (F = 2.3; df 7 /77; p < .05). The secretion of stimulated saliva decreased significantly

from baseline (1.8 ± 1.0) until the end of treatment (1.0 ± 1.0) (t = 2.4; df 13; p < .05) and so did

body weight (69.8 ± 15.3 vs. 66.3 ± 13.6) (t = 3.7; df 17; p < .01). The occurrence of gingivitis

increased significantly from baseline (.25 ± .29) to treatment termination (.67 ± .51) (z = 2.95; p <

.01).

With the exception of mouth dryness and dysphagia, there were significant correlations

between mucositis scores and all oral symptoms rated by patients (Rho = .49 to .68; p < .05).

Significant negative correlations were demonstrated between the resting salivary secretion rate and

experience of a dry mouth from the administration of 10 Gy throughout radiotherapy (Rho = -.56

base

line

10 G

y

20 G

y

30 G

y

40 G

y

50 G

y

60 G

y

end

of tr

eatm

ent

i mon

th a

fter

trea

tmen

t

0

10

20

30

40

50

60

70

80

90

100

mouth dryness

salivary viscosity

lip dryness

taste alteration

ability to talk

assessment

sym

ptom

rat

ings

27

to -.86; p < .05). In addition, there were significant negative correlations between the resting

salivary secretion rate and salivary viscosity at 30 and 40 Gy (Rh0 = -.50 -.63, p < .05) (Study I).

Patients receiving chemotherapy for haematological malignancies

Patients with haematological malignancies evidenced a different pattern of changes. Oral symptoms

tended to increase somewhat from baseline to two weeks later, followed by an improvement.

However, none of these changes were significant with the exception of taste alteration, which

peaked one week after baseline and decreased significantly three weeks after the start of treatment

(Fig. 3, 4).

Fig. 3. Reports of oral symptoms related to saliva among patients receiving chemotherapy forhaematological malignancies (symptom ratings using visual analogue scale).

base

line

1 w

eek

2 w

eeks

3 w

eeks

0

10

20

30

40

50

60

70

80

90

100

pain

ability to perform oral hygiene

dysphagia

gingival condition

feeling of a clean mouth

assessment

sym

ptom

rat

ings

28

Fig. 4. Reports of oral symptoms related to oral mucosa among patients receiving chemotherapyfor haematological malignancies (symptom ratings using visual analogue scale).

Oral mucositis scores paralleled patient reports of oral symptoms with a significant increase two

weeks after baseline (1.8 ± 2.3 at baseline, 5.8 ± 9.4 after 2 weeks) (F = 3.4; df 3/60; p < .05). At

baseline, 57% of the patients evidenced some signs of mucositis, and at most 86% had at least one

such sign. Oral ulcers occurred in 4 % of patients at baseline and this increased to 22% during the

chemotherapy cycle. The secretion rates of stimulated and resting whole saliva did not change

significantly during the chemotherapy cycle. The gingivitis score increased significantly from

baseline (.18 ± .35) until the start of the next cycle (.30 ± .47) (z = 2.62; p < .01), and so did body

weight (75.5 ± 14.0 vs. 76.5 ± 13.9) (t = 2.4; df 22; p < .05) (Study I).

Significant correlations were demonstrated between the oral mucositis scores and the

experience of lip dryness after one and two weeks (Rho = .56 to .62; p < .01). At the assessment

after two weeks, the resting salivary secretion rate was negatively correlated with the experience of a

dry mouth (Rho = -.72; p < .01), and with salivary viscosity (Rho = -.59; p= < .01). After three

weeks the resting salivary secretion rated correlated with dry mouth, salivary viscosity, ability to

perform oral hygiene, taste alteration and the feeling of a clean mouth (Rho = -.48 to -.62; p < .05)

(Study I).

base

line

1 w

eek

2 w

eeks

3 w

eeks

0

10

20

30

40

50

60

70

80

90

100

salivary viscosity

mouth dryness

ability to talk

lip dryness

taste alteration

assessment

sym

ptom

rat

ings

29

Oral symptoms and health-related quality of life (HRQOL)

Patients receiving radiotherapy for head and neck cancer

According to patient ratings on the functional HRQOL scales, quality of life tended to decrease

over time (Fig. 5).

Fig. 5. Men values on functional EORTC QLQ-C30 scales among patients receiving radiotherapyfor head and neck cancer (PF physical functioning, RF role functioning, EF emotional functioning,CF cognitive functioning, SF social functioning, QL global health and quality of life).

Mean symptom scores increased until the end of treatment and so did the specific scales for

patients with head and neck cancer, although these changes did not always reach statistical

significance (Fig. 6). The same pattern was seen for oral symptoms. Thus, an increase of the

radiation dose was accompanied by a lower quality of life (Study II).

baseline 30 Gy end of treatment 1 month after treatment0

10

20

30

40

50

60

70

80

90

100

PF

RF

EF

CF

SF

QL

assessment

func

tiona

l sc

ale

scor

e

30

Fig. 6. Mean values on EORTC QLQ-H&N35 functional scales among patients receivingradiotherapy for head and neck cancer.

At the end of treatment when oral symptoms were most intense, patients who reported that their

oral symptoms had a great influence on their HRQOL (n = 10, 56%) had significantly lower

scores for global health status and all functional scales but cognitive functioning (15.0 to 64.6)

compared to those who reported some or no such influence (64.5 to 89.1) (p < .05). Those ten

patients who reported a great influence also had significantly higher OSSS scores (635 ± 209)

than those who stated that oral symptom had some or no (n = 8, 44%) such influence (353 ± 198)

(t = 2.9; df 16; p < .01). Among the 16 patients who completed the EORTC QLQ-H&N35, there

were 8 who reported that their oral symptoms had a great influence on their HRQOL. They

reported higher symptom scores than those who reported some or no such influence on four of the

seven multi-item scales, and on two of the six single items on the EORTC QLQ-H&N35 at the end

of treatment when oral symptoms were most intense. One month after treatment when oral

symptoms had decreased, no significant differences could be demonstrated between these groups

in quality of life scores or oral symptoms. However, six patients (33%) still reported that their oral

symptoms had a great influence on their HRQOL (Study II).

baseline 30 Gy end of treatment 1 month after treatment0

10

20

30

40

50

60

70

80

90

100

pain

swallowing

senses

speech

social eating

social contact

dry mouth

sticky saliva

assessment

EO

RT

C Q

LQ-H

&N

35

scal

e sc

ore

31

In Study IV, almost all patients (n = 17, 94%) complained about oral symptoms and 15 had been

unable to eat as usual. Oral symptoms had had a very large or large influence on eating for 9

patients. Only one patient who reported eating difficulties stated that the oral symptoms were of no

importance, but that taste alteration was the main problem.

There were statistically significant negative relationships between the OSSS total score and

the EORTC QLQ-C30 global health status and all functional scales but cognitive functioning at the

end of the treatment (r = -.47 to -.65; p < .05). One month after treatment there were significant

negative correlations between the OSSS total score and physical functioning, role functioning and

the global health and quality of life scale (r = -.53 to -.65; p < .05) (Study II).

Patients receiving chemotherapy for haematological malignancies

For this group of patients, there were no significant changes over time regarding HRQOL with the

exception of role functioning which decreased after two weeks and increased at the end of the cycle

(Fig. 7).

Fig. 7. Mean values on EORTC QLQ-C30 functional scales among patients receivingchemotherapy for haematological malignancies (PF physical functioning, RF role functioning, EFemotional functioning, CF cognitive functioning, SF social functioning, QL global health andquality of life).

baseline 2 weeks end of cycle0

10

20

30

40

50

60

70

80

90

100

PF

RF

EF

CF

SF

QL

assessment

func

tiona

l sc

ale

scor

e

32

Similarly, symptoms and single items did not change with the exception of fatigue, which increased

after two weeks and decreased at the end of the cycle. The OSSS scores increased up to two weeks

and then decreased though these changes did not reach statistical significance (Study II).

At the end of the chemotherapy cycle, only one patient reported that oral symptoms had a

great influence on HRQOL, 5 patients (22%) that it had some influence, 12 patients (52%) no

influence, and 5 patients reported no oral symptoms. Three patients stated that their oral symptoms

had been a hindrance in their everyday life, mostly for social reasons (Study II).

After two weeks, there were statistically significant negative relationships between the OSSS

total score and the EORTC QLQ-C30 global health status and all functional scales but role and

emotional functioning (r = -.58 to -.78; p < .01). At the end of the chemotherapy cycle, there were

significant negative correlations between the OSSS and all functional scales but emotional

functioning (r = -.46 to -.76; p < .05) (Study II).

Eating problems: both groups of patients

In Study IV, significantly more patients receiving radiotherapy (89%) reported difficulties to eat

and drink as usual compared to those receiving chemotherapy (39%) ( χ2 = 10.5; df 1; p < .01).

Among all patients, 39% (n = 16) reported that they were able to eat as usual and 17% (n = 7) had

experienced nausea and taste alteration as a hindrance. Sixteen patients reported that their oral

symptoms had a very large or large influence on their ability to eat, and three reported some

influence. The remaining six patients with eating difficulties reported nausea and taste alterations.

Fifteen percent (n = 6) reported difficulties to eat but that they did not mention this to hospital staff

– “it was not too bad”. The respondents who reported eating difficulties (n = 25) had higher

OSSS scores (456 ± 268) than those (n = 16) without eating problems (117 ± 98) (t = 4.8; df 39;

p < .001). There was also a significant difference in mucositis scores (23.1 ± 15.7 vs. 6.8 ± 6.5) (t

= 3.9; df 39; p < .001). The treatment and advice received for eating difficulties concerned

nasogastric feeding (n = 4), nutritional supplements (n = 6), dietary advice (n = 2) and preventive

local anaesthesia (n = 4). Among the 25 patients who reported eating difficulties, 13 reported

drinking difficulties as well.

Education and knowledge among nursing staff

None of the nurses and only four of the enrolled nurses (3% in all) reported that they had received

substantial education in oral care. Twenty-three nurses and six enrolled nurses (21%) reported that

they had not received any education in oral care. Among the remaining 76%, 19% did not

remember, and 57% had received some education in oral care during their basic training. Only 7%

of all respondents stated that they had acquired sufficient knowledge in oral care during their basic

33

training. An additional 5% stated that they had acquired enough knowledge of oral care in general

but not for patients on chemotherapy or radiotherapy. A total of 13% of all respondents had

attended a regular continuing education course in oral care, and 32% had not received any

continuing education in oral care (29 nurses, 15 enrolled nurses). Attendees assigned a higher

priority to oral care than did remaining staff. A need for continuing education in oral care was

stated by 86% (Study III).

The self-rated knowledge was poorest on fluorides, oral signs and symptoms and

examination of the oral cavity and highest on tooth brushing and cleaning dentures. Nurses

estimated their knowledge on pain relief to be significantly better (7.3 ± 1.8) than did enrolled

nurses (5.2 ± 2.4) (t = 5.5; df 134; p < .001). However, enrolled nurses estimated their knowledge

to be significantly better than did nurses on cleaning dentures (8.4 ± 1.6 vs. 7.0 ± 2.1) (t = 3.9; df

134; p < .001) and examination of the oral cavity (6.4 ± 2.2 vs. 5.7 ± 1.9) (t = 2.1; df 135; p < .05)

(Study III).

Attitudes to oral care

According to Study III, all staff thought that oral care was important for patients with these cancers.

However, 18% felt uncomfortable to ask their patients regarding oral hygiene. There was a

significantly higher proportion of enrolled nurses (28%) than nurses (12%) who felt

uncomfortable (χ2 = 5.1; df 1; p < .05). Those who performed oral examination frequently felt

more comfortable to discuss oral hygiene that those who did not (χ2 = 11.5; df 2; p < .01). A total

of 45% objected to examining the oral cavity and stated patient integrity as the main reason. Those

who objected to performing oral examination felt significantly more uncomfortable to discuss oral

hygiene than those who did not (χ2 = 7.7; df 1; p < .01). Discomfort in examining the oral cavity

was reported by 28%. More enrolled nurses (38%) than nurses (22%) felt uncomfortable at oral

examinations (χ2 = 4.0; df 1; p < .05).

Hospital staff had asked about oral hygiene according to 25% (n = 10) of the patients. Most

patients (n = 27, 66%) considered it to be all-right if hospital staff asked about oral hygiene, and an

additional 9 (22%) thought it would be very good. Only 4 patients (10%) had no opinion on this

matter and one patient did not want the hospital staff to ask about oral hygiene, but that it was

enough if dental staff did so. A total of 29 patients (71%) thought it was all-right if hospital staff

examined their oral cavity and an additional 9 (22%) considered it to be very good. Three patients

did not want this procedure to take place (Study IV).

34

Oral care

Referrals to dentistry

A total of 167 patients (88%) received active treatment for their cancer, and 73 of these (44%) were

referred to dentistry before the start of treatment. An additional 19 (11%) were referred later for

acute complications. Among the 94 patients who were not referred to dentistry before the start of

their treatment, 8 patients were referred later for consultation (Study V).

In Study V it was found that 112 patients had received chemotherapy and 50 patients had

received radiotherapy towards the oral cavity. Some of the patients had received a combination of

those treatments or radiotherapy towards other sites, surgery or various combinations. Of the ten

patients who received intensive chemotherapy, 7 were referred before the start of treatment and 3

were referred for acute complications. Twenty-four (34%) of the 70 patients who received

moderate intensity chemotherapy were referred to dentistry before the start of treatment, and 10

(14%) were referred for acute complications. Corresponding figures for the 32 patients receiving

mild intensity chemotherapy were 3 (9%) referrals before the start of treatment and 6 (19%) acute

referrals. A total of 53 patients (47%) had visited dentistry.

Of the 50 patients who received radiotherapy directed towards the oral cavity, 45 (90%) were

referred to dentistry before the start of treatment, and two patients (4%) were referred for acute

complications (Study V).

There was a statistically significant relation between referral to dentistry before the start of

treatment and notes on oral problems in the patient records (χ2 = 15.1; df 1; p < .001). However,

43 patients (43%) with oral problems documented before or during their medical treatment were

not referred to dentistry before the start of treatment. Sixteen of them were later referred for acute

problems (Study V).

In the interview in Study IV, all patients who received radiotherapy reported that they had

visited hospital dentistry. Among patients receiving chemotherapy, 11 (48%) had done so. Most

patients (n = 27) were referred to hospital dentistry in accordance with routines. The main reason

for referral was examination before the start of medical treatment, which was true for 86% of those

who visited hospital dentistry.

A total of 54% of the staff in Study III reported that patients were routinely referred to

dentistry before the start of medical treatment. A majority reported that they received sufficient help

from dentistry, which was true for more nurses (79%) than enrolled nurses (51%). Repeated

contacts with dentistry were reported by 42%.

35

Information on oral complications

Nurses stated that they informed patients that oral complications might result from cancer treatment

significantly more often than did enrolled nurses (χ2 = 54.4; df 2; p < .001). Among the nurses,

69% always informed patients on oral complications (Study III). Information on oral

complications had been received by 85% of the patients in Study IV (n = 35), including all those

receiving radiotherapy (n = 18), mostly verbally (94%). Mostly dental staff performed this (61%).

Examination of the oral cavity

According to the staff in Study III, daily examination of the oral cavity was performed by 6% and

19% never performed oral examination. It was most common to examine the patient occasionally,

usually if the patient indicated some complaint. Nurses examined patients orally significantly more

often than did enrolled nurses (χ2 = 20.8; df 2; p < .001). Only 10% of the respondents reported

that they used a specific system for oral examination. However, 61% considered that a more

systematic examination would be useful.

Out of the 41 patients in Study IV, 21 (51%) reported that no hospital staff had examined

their oral cavity. Patients receiving chemotherapy were over-represented in this group. Among

patients receiving radiotherapy (n = 18), 16 were examined by a physician usually at the weekly

head and neck conference, and one had been examined by a nurse. Among patients receiving

chemotherapy (n = 23), three had been examined by a physician and one also by a nurse. Dental

staff had examined an additional 10 patients (24%), but no hospital or dental staff had examined 11

patients (27%) and among these, 9 were inpatients. In addition, 9 of the 11 patients who had not

been examined reported that they had oral symptoms during treatment.

Oral hygiene procedures

Information on oral hygiene was given to patients according to 36% of staff in Study III, usually

focused on encouragement of thorough cleaning of the teeth. A majority never instructed patients

on how to perform thorough oral hygiene procedures.

All Study IV-patients receiving radiotherapy had received information on oral hygiene, which

was significantly more than those receiving chemotherapy (56%). A total of 31 patients (76 %),

including all patients receiving radiotherapy, had received information on oral hygiene. Ten patients

(24%) received no information and seven of these were outpatients. In 73% of the cases, dental

personnel gave the information.

A total of 21 patients (51%), including all those who had received radiotherapy had also

received practical instruction in oral hygiene, given mostly by a dental hygienist. Patients who had

36

received instruction in oral hygiene brushed their teeth significantly more often (2.6 ± 0.8 /day)

than those who had not received instruction (2.0 ± 0.7) (t = 2.4; df 39; p < .05) (Study IV).

In Study III, most of the staff (97%) stated that they assisted patients with their oral care if

necessary. When this occurred it was to a great extent on initiatives from the staff. The nurses

often delegated the oral care to enrolled nurses. In Study IV, 59% of the patients (n = 24) reported

that their oral hygiene procedures had been satisfying during treatment and 41% reported some

difficulties with their oral hygiene, because of extensive procedures, pain and nausea. No patient

reported that they had needed help with their oral hygiene procedures. In Study I, it was

demonstrated that oral hygiene on the whole was good or excellent during the treatment period.

Those 18 patients who were treated with radiotherapy for head and neck cancer were

interviewed one month after treatment as well. The oral hygiene procedures had been satisfying for

15 patients (83%), but 3 still reported some difficulties (Study IV).

Oral self-care

The majority of patients (68%) brushed their teeth twice a day. During treatment, patients used

toothpaste significantly less often than they brushed their teeth, which may be due to the taste and

composition of toothpaste. All patients receiving radiotherapy were informed and instructed to

clean their oral mucosa 4 times daily and in addition to use antifungal prophylaxis. Twelve patients

did so ≥ 3 times/day. The same routines were recommended for chemotherapy patients when they

were isolated during the leukopenia period, which was true for three of six patients with

leukopenia. Rinsing solutions and saliva substitutes were used 3 - 4 times daily during a short

period of time (2 – 4 weeks) among patients receiving radiotherapy. No patient receiving

chemotherapy used rinsing solutions or saliva substitutes frequently. Three of the patients

receiving radiotherapy did not use fluoride daily, despite such a recommendation (Study IV).

Documentation of oral status and oral care

In study V, 167 patients (88%) received active treatment for their cancer. Physicians´ records

contained notes on oral status for 136 (81%) of these patients and the notes concerned oral

problems in 93 patients (56%). Corresponding figures for the nurses were 61 records (37%) with

notes on oral status and 36 (22%) concerning oral problems. Among 21 patients given no active

treatment there were notes on oral problems by physicians in 11 records. In the nurses´ records,

there were notes on oral problems for four of these patients. There were no notes on oral care in

any of the physicians’ records. In the nurses´ records, there were notes for 24 patients (14%).

A total of 84% of the nurses in Study III stated that they documented findings when there

were status changes or problems in the oral cavity and 13% did so irrespective of specific

problems. The enrolled nurses did not make notes but reported verbally to nurses.

37

DISCUSSION

General aspects

The aim of this thesis is to study several aspects of oral status, oral health and its relation to quality

of life, and oral care among patients treated with radiotherapy or chemotherapy. The approach

chosen was to focus on patient experiences of oral symptoms and on oral care as provided by

several groups of professionals. The most interesting finding in the prospective study of patients

receiving radio- or chemotherapy was that oral symptoms are related to HRQOL. These

relationships were investigated by several methods, yielding a consistent pattern of results.

Patients’ communication skills and possibilities to eat and drink as usual were compromised

because of their oral symptoms. The oral cavity is neglected in health care, which creates

unnecessary problems for patients. Patients had no objections against having their oral cavity

examined or to discuss oral hygiene with hospital staff. It is urgent that nursing staff understand

the importance of oral problems and their relation to HRQOL in order to provide adequate care.

However, nursing staff reported that their knowledge and skills in oral examination and assessment

was poor. In addition, they had objections against examining the oral cavity and to discuss oral

hygiene and stated patient integrity as a reason for this, an attitude that was not shared by patients.

Overall, the results illustrate the need for multidisciplinary collaboration in oral care.

Oral health, oral symptoms and oral complications

Reports of oral symptoms reflect patient opinion, and they are valid independently of the results of

assessments by professional staff. Patient reports are valuable for communicating with patients and

between nursing and dental staff. Previous research has shown that patients do not always report

their oral symptoms (Bjordal et al., 1995, Persson, 1998, Wells, 1998) which may create problems

in oral care. Persson et al reported that several oral complications were observed by staff, but the

patients saw these as problems associated with the treatment that could not be avoided and therefore

did not talk about them (Persson, 1998). In a study by Wells, patients regarded treatment-induced

problems to be insignificant compared to those occasioned by the cancer disease itself (Wells,

1998). The present findings illustrate that patients experience several oral symptoms and that there

is good agreement between patient reports and recordings by dental staff. Among patients receiving

radiotherapy, there were significant correlations between mucositis scores and all aspects of oral

symptoms beside mouth dryness and dysphagia. Mouth dryness and salivary viscosity correlated

significantly with the resting salivary secretion rate. These relationships were less evident among

patients receiving chemotherapy. However, there were correlations between mucositits scores and

lip dryness and between the salivary secretion rate and several aspects of oral symptoms.

38

The oral symptom VAS used in the present study includes aspects such as difficulties to perform

oral hygiene and a feeling that the mouth is not clean. These are never assessed in an index used by

health care staff. The studied symptoms represent a variety of oral discomforts and all patients

receiving radiotherapy and a major proportion receiving chemotherapy experienced such

symptoms. The observation that patients receiving radiotherapy are more affected by oral

symptoms than are chemotherapy patients is in agreement with earlier findings (Lunn, 1998, Sonis

et al., 1999, Spijkervet et al., 1989). Patients with head and neck cancer have their tumours located

in or in the vicinity of the oral cavity, which may create an additional influence on their experience

of oral symptoms. The tumour itself may cause a variety of symptoms. All types of oral symptoms

increased irrespective of the fact that patients were subjected to oral examination and oral care by

dental staff regularly.

Since the occurrence of oral mucositis agreed with reports of oral symptoms, mucositis may

be an important factor related to this type of discomfort (Bundgaard et al., 1993, Kuten et al., 1986,

McGuire et al., 1998). Bundgaard et al reported that 73 % of patients with head and neck cancer

had mucositis and many also reported oral discomfort (Bundgaard et al., 1993). Kuten et al

reported erythema in the mucosal surfaces among 45% of patients receiving radiotherapy,

dysphagia was reported by 59% and soreness by 37% (Kuten et al., 1986). In a study by McGuire

et al on patients with leukaemia, mucositis was expected to increase approximately 2 weeks after

chemotherapy and so were patient rating of pain intensity (McGuire et al., 1998). For patients

receiving chemotherapy in the present study, the resting salivary secretion rate was related to

several oral symptoms and needs to be taken seriously. Some patients reported that they had

received extensive information and advice but no measure gave sufficient relief. This illustrates that

oral symptoms may be severe.

Patients receiving radiotherapy experience severe oral symptoms and need considerable

support from dental as well as nursing staff. After treatment termination, when symptoms are at

their peak, it is of great importance that the dental staff, who has sufficient knowledge to treat the

oral symptoms, continues to see these patients. Mouth and lip dryness and salivary viscosity

remained elevated in the present patients one month after treatment. This represents an important

threat to the oral health since saliva is an important protector (Ekström, 2000, Jansma, 1991,

Tenovuo and Lagerlöf, 1994). The patients also needs to continue treatment with fluoride to prevent

dental caries (Jansma, 1991), a procedure which is not always sustained (Epstein et al., 1995).

Repeated support from professional staff facilitates compliance, and nursing staff needs to improve

their knowledge on fluorides.

A surprising finding was that the salivary secretion rate recovered at the end of treatment for

patients receiving radiotherapy. Previous findings have shown a reduction of the resting salivary

secretion rate among patients receiving radiotherapy (Eisbruch et al., 1999, Epstein et al., 1998,

39

Kuten et al., 1986). However, few patients were studied in the saliva test because some of them

could not provide any saliva at the later assessments and did not want to participate for that reason.

The limited time of five minutes to collect saliva may be too short to obtain a valid assessment.

Nevertheless, patients experienced dry mouth and an altered salivary viscosity, which may confirm

that most patients were suffering from the reduced salivary secretion rate.

Patients receiving chemotherapy did not experience frequent oral symptoms, although some

of them reported severe symptoms. Unfortunately, there is no reliable predictor of who will develop

such symptoms, which emphasises the importance of referring all patients to dentistry before the

start of treatment. In Study V, most patients receiving intensive chemotherapy were referred to

dentistry before the start of treatment, but a large proportion was not although they had notes on

oral symptoms in their records. In addition, some of the patients in Study IV were not examined by

any professional staff although they reported oral symptoms. The oral mucositis scores peaked

after two weeks. The same findings were reported by Zittoun et al (Zittoun et al., 1999), who

demonstrated the highest proportion of patients (34%) with sores in their mouth at the nadir of

blood counts. In the present study almost all chemotherapy patients showed some signs of

mucositis, although the mean scores were lower than those of patients receiving radiotherapy.

These patients reported also an increase of fatigue, a finding that is in agreement with earlier

studies (Persson et al., 1995, Zittoun et al., 1999). In an interview study, Persson found that fatigue

was the first symptom noticed by patients (Persson, 1995), and Zittoun et al reported fatigue to be

elevated during the chemotherapy course compared to the end of the course (Zittoun et al., 1999).

In both studies, patients also reported several oral problems. Fatigue may be one reason for

unsatisfactory maintenance of oral hygiene procedures. Body weight increased unexpectedly,

despite the fact that patients reported difficulties eating and taste alterations. A closer analysis

demonstrated that this increase was attributable mainly to two individuals.

The gingivitis score increased during the assessment period for both groups, although oral

hygiene was judged to be good or excellent throughout the study. However, the assessment of oral

hygiene may have been too global. A more thorough assessment may be required for mapping the

relationship between oral hygiene and gingivitis during cancer treatment. Patients reported that they

had some difficulties with their oral hygiene procedures.

Oral health and health-related quality of life

The finding that oral symptoms were significantly related to HRQOL was illustrated by three

different methods: patient reports in interviews, the differences in HRQOL and oral symptoms

between patients who reported that oral symptoms had an influence on their HRQOL and those

who did not, and the correlations between the EORTC instruments and patient experiences assessed

by the VAS. These findings support the approaches to oral health-related quality of life suggested

40

by Gift et al (Gift and Atchison, 1995). The oral cavity was compromised for the majority of the

patients (88%), and there was a relation between oral symptoms and HRQOL. However, the

present study allows no conclusions about the directions of this relationship.

In all correlational analyses, independent of patient group, there were associations between

oral symptoms, physical functioning and social functioning. Similar findings have also been

reported by Bjordal et al (Bjordal et al., 1999). These aspects of HRQOL seem to be most affected

by oral problems. The suggestions by MacEntee et al (MacEntee et al., 1997) that oral health is a

mix of three themes: comfort (including pain and eating), oral hygiene (the significance of a clean

mouth) and general health, are supported by the present findings. Oral pain and problems with

social eating increased during treatment among patients receiving radiotherapy and the latter

problem remained elevated one month after treatment. Patients who reported that oral symptoms

had an influence on their HRQOL reported higher scores for pain and social eating, even though

the latter did not reach statistical significance. A main proportion of all patients (61%) reported

difficulties to eat. For patients receiving chemotherapy, there was a relation between the feeling of a

clean mouth and all functional scales but role functioning, which supports the significance of a

clean mouth for HRQOL. In addition, there were significant correlations between communication

problems and both role and social functioning for patients receiving radiotherapy. The pattern of

results on the oral symptom VAS corresponded to those of the EORTC questionnaires which

confirms the notion that oral health and general health are two sides of the same coin.

The findings from the EORTC QLQ-H&N35 instrument are in agreement with those

reported by Hammerlid et al, who found that symptoms increased until 2 or 3 months after the start

of treatment, although dry mouth and taste alteration remained until the 1-year follow-up

(Hammerlid et al., 1997b). Bjordal et al found that the EORTC QLQ-H&N35 questionnaire is

sensitive to change over time within groups and reported an increase in multi-item and single items

similar to that in the present study (Bjordal et al., 1999).

Within dentistry, health and oral health is very often defined as the absence of disease.

However, health is a dimension separate from disease. It incorporates psychosocial and social

functioning in addition to physical functioning. Besides, the influence on everyday life is an

important part of health. There is no previous study in which patients were interviewed regarding

their experiences of oral symptoms and their relation to HRQOL. In the present study, patients

reported problems performing oral hygiene, eating and drinking and communicating with others,

which is in agreement with earlier findings (Bjordal et al., 1995, Epstein et al., 1999, Hammerlid et

al., 1997a). They did not feel that their mouth was clean, which may have reduced their self-esteem

(MacEntee et al., 1997). In addition, they reported that their oral symptoms had an influence on

their quality of life. These results attest to the notion that oral health is strongly related to HRQOL.

41

HRQOL did not change appreciably among patients receiving chemotherapy, neither did the

experience of oral symptoms. This is in agreement with Zittoun et al who found no significant

changes over time of the average overall physical condition, quality-of-life, physical functioning or

social functioning scores. However, there were increases of mouth sores, mouth dryness and

difficulty swallowing at the nadir of the blood counts, but no change in taste and dental problems

(Zittoun et al., 1999). Persson et al found reduced quality of life scores among patients with

leukaemia and highly malignant lymphoma over a period of two years, with the most pronounced

reduction in relapsing patients. Patients also reported dry mouth, swollen tongue, pain, blisters,

gingivitis, dental problems and altered taste (Persson, 1998). However, relations between oral

symptoms and HRQOL were not investigated in any of the studies. The fact that most of the

functional quality-of-life scales were significantly related to the summary score of oral symptoms

in the present study, supports the notion that oral health plays an important role in health

perception.

In the present study, HRQOL was assessed by the EORTC QLQ-C30 and the EORTC

QLQ-H&N35 questionnaires. They are both well-known instruments that have been validated in a

number of studies, and they are sensitive to changes (Aaronson et al., 1993, Bjordal et al., 1999,

Bjordal and Kaasa, 1992, Bush et al., 1995, Epstein et al., 1999, Hammerlid et al., 1999, Osoba et

al., 1998, Persson et al., 1995, Zittoun et al., 1999), which supports the reliability of the HRQOL

results of the present study.

Education, knowledge and attitudes to oral care

The most important knowledge for hospital staff is to recognise healthy signs and symptoms of

disease in the oral cavity, and to understand when dental staff should be contacted for further

examination. In the present study, nursing staff rated their knowledge on oral signs and symptoms

and examination of the oral cavity to be the poorest, nurses even poorer than enrolled nurses. To be

able to detect symptoms of disease, it is necessary with regular examination, if possible daily. The

fact that nurses who performed daily examination felt more comfortable to discuss oral hygiene

and did not object to examining the oral cavity illustrates the importance of regular examination.

The continuous improvement in dental status among individuals in Sweden (Österberg et al., 1995)

emphasises the importance of improved knowledge. Knowledge on cleaning dentures, which will

likely be needed less often in the future, was rated high by nursing staff. It appears necessary to

improve the education in oral health science for nursing staff and in addition, to improve and

promote continuing education in oral care. This was reflected in nursing staff statements in the

present study. This should be done in close co-operation with dental staff. Dental hygienists keep

abreast with the research within oral health science, but this must be shared with nursing staff in an

ongoing continuing education system. Such an arrangement has been shown to be efficient by

42

Paulsson et al (Paulsson et al., 1998). Nurses are in charge of support and facilitation of the

patient’s knowledge and self-care activities and this should include oral care.

An interesting and important finding was the discrepancy between nursing staff and patients

regarding their attitudes to oral examination and oral hygiene. It is obvious that many nurses have

too cautious an attitude to oral examination and procedures involved in oral care. Patients

apparently do not experience any discomfort at the prospect of an oral examination. Neither do

they consider talking about their oral health status to be any different from speaking about health in

general. One reason why nurses objected to examining the oral cavity is probably lack of

knowledge and experience.

Oral care and self-care

In the present study, a carefully prepared oral care program for patients receiving radiotherapy was

used on the wards studied. All patients were referred to dentistry before the start of treatment and

were examined regularly. However, these patients are also in the need of regular maintenance after

treatment termination due to the persisting side effects of radiotherapy. Dental staff has to be aware

of remaining side effects and maintain patients properly on a regular basis.

Many patients receiving chemotherapy were not referred to dentistry despite distinct

recommendations (Jontell and Koch, 1995, National Institute of Health Consensus Development

Conference, 1989). This may be due to a lack of knowledge on the part of staff. The fact that many

patients were outpatients with lymphomas who were not expected to receive the most intensive

chemotherapy may have had an impact here. Although some of them did not experience any oral

symptoms, some did so without being in contact with dental staff to discuss their problems. The

co-operation between dental and hospital staff with regard to how to care for patients receiving

chemotherapy seems to be deficient. It is important to improve the routines for oral care including

regular oral assessment. The introduction of nursing staff to an assessment guide that is simple

and useful could facilitate assessment as stated by staff in Study III.

Several patients reported eating problems, sometimes due to taste alteration and loss of

appetite. This may not be considered an oral problem, but the presence of saliva is important for

taste sensations (Ekström, 2000). Even if the salivary secretion rate did not change for all patients,

some of them experienced mouth dryness. They may have benefited from advice on saliva

substitutes to improve their taste. Lip dryness was another symptom that was reported to bother

some of the patients, but none had been informed on lip care products.

Oral hygiene was assessed by a global score, which limits the conclusion regarding the

influence of plaque. A more thorough assessment is desirable in future research, particularly since

many patients reported difficulties with their oral hygiene and a feeling that they did not have a

clean mouth, even though they performed oral hygiene frequently. Those patients who had been

43

instructed in oral hygiene brushed their teeth more often than those who had not. In view of this

finding, it would have been interesting to see if this was reflected in a thorough oral hygiene index

assessment. People need to know how, not only why, to comply with extensive oral hygiene

procedures (Rich, 1995). In addition, written information, which was shown to be uncommon in the

present study could be an important resource for patients. Patients brushed their teeth more often

than they used toothpaste, a coincidence that may depend on the taste and composition of the

toothpaste. Mild toothpastes including fluorides are available that would be more easily tolerated

by patients with an affected oral mucosa, a fact that patients need to be informed about.

Documentation of oral status and oral care

There are serious flaws in the contemporary documentation of oral care. Similar results have been

reported by Ehrenberg et al who found a very poor agreement between patients´ statements and

data from records on several aspects of nursing care, but specifically on oral conditions (Ehrenberg

and Ehnfors, 2001). Although no explicit comparisons with patient status were made, in the present

study the discrepancy between physicians´ and nurses’ documentation was so large that more oral

problems than were found in the nursing records are likely to have existed. If and how examination

has been performed and what care has been provided and evaluated is not always reflected in the

documentation. In the present study, almost all patients reported some symptom, which should

have been noted in their records. However, the records of patients who were interviewed were not

scrutinised. This means that conclusions from Study V were based on a review of records and not

on observations of patients. However, notes in patient records may be an indicator of the care

provided. Deficiencies in records may cause serious errors in care because important information

is lost (Ehrenberg, 2000). If the patients’ problems are not detected, there is no possibility to

provide adequate care. To meet patients´ needs during treatment, their oral status, care plans and

nursing procedures have to be carefully documented. Standardised instruments for the assessment

of oral status and sufficient staff knowledge and skills are important.

Methodological considerations

The patient samples (Studies I, II and IV) are relatively small, which limits the conclusions of the

present study. It should be noted that several earlier studies on this group of patients also employ

small samples (Bernhoft and Skaug, 1985, Langius, 1995, Persson et al., 1995, Wahlin and

Matsson, 1988). However, the present patients were included consecutively and the oral symptom

pattern among patients receiving radiotherapy are in agreement with results of previous research

(Bjordal et al., 1999, Epstein et al., 1999, Hammerlid et al., 1997a), with an increase of oral

discomfort from the start until the end of treatment and symptoms remaining after treatment

termination.

44

The studies are limited to two hospitals in Sweden, although one is a university hospital and one a

regional hospital, which should improve the external validity of the findings. There was a low non-

participation rate in all studies.

Most of the instruments (OMI, salivary secretion rate, DFS, HRQOL) are well-known

methods with proven validity which attests to the confidence that can be placed on the conclusions.

The oral mucositis index according to Schubert et al was used (Schubert et al., 1992). In the

present study, it was of interest to assess mucositis carefully because even very local and small

lesions may cause discomfort and be noticed by patients. The inter-rater agreement calculated as

percentage agreement (0.91) and Cohen´s kappa (0.64) was sufficient (Study I). Resting saliva was

collected only for 5 minutes, which may be too short to yield a valid measure in patients with

hyposalivation. To provide a valid DFS index, there is a need for a more thorough examination

including x-rays, which was not possible in the present study, because dental staff had not

examined all patients. However, the DFS index was used here only to give an indication of

patients’ dental status and was not used for the analyses.

The VAS used to assess patient experiences was a revised version of that presented by Kosac

et al (Kosac et al., 1996). The findings from this scale are in agreement with those of the EORTC

QLQ-H&N35, a validated instrument (Bjordal et al., 1999), which enhances the validity of the

conclusions on patients experiences.

In the interviews with staff, the categorisation of statements was made by the author, which

may give rise to questions of bias. However, since a majority of the questions concerned “matter

of fact” issues, no advanced interpretation was necessary. Inter-rater agreement was assessed for

the analyses of the patient interviews. The author categorised the statements and a second assessor

sorted them using the predetermined categories. These procedures should be sufficient for the

conclusions of the present study, but the fact that the interviewer was a dental hygienist may have

influenced the replies of the nursing staff in a socially desirable direction.

It would have been of interest to use a more thorough oral hygiene index. This would have

improved the data on the frequency of performance of oral hygiene procedures. The daily self-

recording form was simple, but some patients may have been too weak to complete it accurately.

The five studies approach the field of oral health and oral care from different perspectives.

They were performed during different periods in partly different settings, which limits the

comparisons of results between studies. This is most apparent concerning possibilities for direct

comparisons between interviews with staff and patients. These two studies were performed

approximately one year apart.

The fact that all types of oral symptoms increased for patients receiving radiotherapy

irrespective of regular oral care by dental staff, indicate that oral symptoms are difficult to treat. The

45

present study allows no conclusions about how these patients would have experienced their oral

discomfort without the support received, because no control group was included.

A positive feature of the present study is that the relation between oral health and HRQOL

was assessed by three methods: patient reports in interviews, the differences in HRQOL and oral

symptoms between patients who reported that oral symptoms had an influence on their HRQOL

and those who did not, and the correlation between the EORTC instruments and patient

experiences assessed by the VAS. This strongly supports the conclusion that oral health is related

to HRQOL, which emphasises in the importance of a multi-disciplinary approach to oral care.

Implications for future research

In order to provide evidence-based oral care and nursing, it is essential to achieve scientific

evidence concerning the effects of oral programs for patients receiving cancer treatment. Existing

protocols are employed in clinical practice to a varying extent and there is a lack of research within

this field (Barker, 1999, Lunn, 1998). In order to avoid the small sample sizes commonly used, it

would be desirable to perform multi-centre studies. Of particular interest would be to investigate if

instruction in oral hygiene has any impact on patients’ self-care compliance and routines. In

addition, it is essential to study the influence of regular standard plaque removal on oral symptoms.

Extended routines for referral to dentistry, including all patients receiving chemotherapy need to be

evaluated with a focus on the frequency of oral symptoms.

A challenge would be to include more oral care in the basic education of nursing staff and to

provide a continuing education program repeatedly, and to evaluate if such education has any

impact on attitudes and if it is beneficial for patients. Further studies are also warranted of the

frequency of oral symptoms among patients receiving chemotherapy and what impact such

symptoms have on patients’ health-related quality of life.

In addition, it would be of interest to investigate if an extended use of key words in nursing

diagnosis and a more thorough documentation could facilitate the co-operation between nurses and

dental hygienists and if that has any consequences for patients.

46

CONCLUSION

The major conclusions of the present study are as follows:

♦ Patients receiving radiotherapy experienced an increase of oral symptoms irrespective of the

oral care provided. These symptoms remained to a large extent one month after treatment.

♦ Overall, patients receiving chemotherapy experienced fewer and slighter oral symptoms than

did patients receiving radiotherapy.

♦ There was good correspondence between symptoms perceived by patients and complications

assessed by dental staff.

♦ Oral symptoms were significantly related to patients’ health-related quality of life, particularly

among those receiving radiotherapy.

♦ There is a lack of adequate education and continuing education in oral care among nursing

staff.

♦ The attitudes to oral examination and discussion on oral hygiene differed between nursing staff

and patients. Nursing staff objected to examining the oral cavity referring to patient integrity.

This was not considered as a hindrance among patients.

♦ Referrals to dentistry before the start of medical treatment were not performed sufficiently

often among patients receiving chemotherapy.

♦ Daily examination was rare. All patients receiving chemotherapy were not examined orally

before or during treatment.

♦ Information on oral complications and oral hygiene were insufficient.

♦ Patient compliance with oral hygiene procedures was acceptable. However, some patients

reported difficulties. Patients who received instructions on oral hygiene performed oral hygiene

procedures more frequently than those who received no instruction.

♦ Oral status and oral care was insufficient documented, particularly in nursing records.

47

ACKNOWLEDGEMENTS

I would like to express my sincere gratitude to:

♦ Professor Per-Olow Sjödén, my primary supervisor and co-writer, for excellent guidance,

inspiration, support and constructive criticism.

♦ Odont. Dr. Ylva-britt Wahlin, my second supervisor and co-writer, for encouragement, support,

constructive criticism, friendship and magnificent humour.

♦ Professor Anders Wahlin, my co-writer, for support, encouragement and constructive criticism

♦ Doctoral Student Marie Elf, my co-writer, for inspiration, encouragement and friendship

Special thanks to

♦ The patients for their kind participation in the study.

♦ The nurses and enrolled nurses for their kind participation in the study, and specifically the

nurses who were contact person on each ward for their co-operation and enthusiasm to

participate in including patients.

♦ Katarina Gahnberg for supporting me in gathering data and for encouragement and friendship.

♦ The staff at the Department of Oral and Maxillofacial Surgery – Hospital Dentistry,

Akademiska Hospital, Uppsala for all kind of support with the collection of data.

♦ Solveig Hannersjö, for providing me with generous working conditions, and for never-ending

encouragement, support and friendship.

♦ Solveig Sundin and the library staff for encouragement, support and outstanding service

♦ Ylva Rohlén for supporting me with all kind of practical issues.

♦ Marianne Omne-Pontén for being my mentor during the initial phase of the study

♦ Anna Ehrenberg for encouraging support in completion of this thesis.

♦ Britta Pettersson, Lars Jacobsson and Gram Svärdström och for being my first teachers and

inspirers within the field of Dental Hygiene.

♦ Anders Ström for encouragement and assistance with the scientific presentation.

♦ Eva Kvarnström for valuable advice on lay-out.

♦ Maj-Britt Sundelin and the staff at the Department of Public Health and Caring Sciences

Uppsala University for assistance with practical matters.

48

♦ All colleagues at the Section of Caring Sciences, Department of Public Health and Caring

Sciences Uppsala University for interesting interdisciplinary discussions and constructive

criticism in courses and seminars.

♦ All colleagues at the Section for Dental Hygiene at Högskolan Dalarna and especially Gun

Sandberg my co-worker as teacher and student over the years for encouragement, support and

inspiring discussions.

♦ All colleagues at the Department of Health and Caring Sciences at Högskolan Dalarna for

inspiring environment and fruitful discussions.

♦ My employer Högskolan Dalarna for providing me with generous working conditions

♦ All personal friends and colleagues for being there, when I needed you.

Lastly

♦ Staffan, my dearest husband and my greatest love who always have supported me in life as

well as my professional career

♦ Leonard our son and my greatest joy in life

♦ My dear sister Barbro and her family Lars, Håkan, Anna, Malin, Johan, Viktor, August, Peter,

Ann-Sofie, Samuel and Tobias for being my extended family through all phases of my life.

The studies were supported by grants from Dalarna Research Institute, The former Falun College

of Health and Caring Sciences (Vårdhögskolan), the Department of Public Health and Caring

Sciences, Section of Caring Sciences, Uppsala University, Högskolan Dalarna – Health and Caring

Sciences and The Swedish Dental Society.

The Department of Public Health and Caring Sciences, Section of Caring Sciences, Uppsala

University and Högskolan Dalarna – Health and Caring Sciences generously supported the

printings of this thesis.

49

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